We are not alone... Never bottle up your emotions share to others that don't know what you are going through.

[Sarahbarber]

Keep fighting...

This is my story I would finally like to share...

In March 2012 i had a laparoscopy surgery and was diagnosed with endometriosis, a chronic and debilitating condition where cells similar to the ones in the lining of the womb (uterus) are found elsewhere in the body. It can cause excruciating  pelvic pain, painful periods and ovulation pain, infertility, fatigue and bowel and bladder problems. Endometriosis affects 1 in 10 women, unfortunately I am one of those people. That statistic is as many as diabetes yet very few people have even heard of it. The impact can be felt for life and there is no cure.

This condition has affected me so much mentally and physically through the trauma and pain I have experienced. It has taken away so much enjoyment and happiness from my life since I was 16 Although I was only diagnosed at 22, I have had symptoms since 2006 and it has been a very challenging few years. On average it takes people 8 years to get their diagnosis, the only way to get an accurate diagnosis is through laparoscopic surgery which in itself is not pleasant to go through at the age of 22. I was diagnosed with stage 4 endometriosis (highest stage) and was my body was put into early menopause at the age of 22, luckily I've had 9 years my pain has been managed on various medications.

Unfortunately the last year I become very unwell again, i was unsure why i felt so fatigued. Most of you may know I own Farsley Barbers and have worked really hard over the last 10 years and rare for me to be ever off poorly. Over the pass year i have struggled with work due to my condition and have struggled to fully explain why to many of you. I had to reduce my working hours and take lots of time from work, due to this I have lost business too and can only apologise to those that I could not explain the real reason I have taken time from work.This has impacted not only my physical health but my mental health.

I was admitted to hospital in June this year after suffering intensive pain. I finally saw the the consultant and was told my endometriosis has returned and need further surgery to investigate and treat accordingly. I was told the waiting times are around 2 years on the NHS. So had no choice to seek advice privately, I can go ahead with surgery on the 12th January 2023 privately at a cost of £3700.

Having being diagnosed with a chronic, life long condition with so little treatment and no cure is pretty hard to deal with… I still don’t think I have really come to terms with it and each day feels like a continuous battle with my body. Endometriosis needs more awareness, it is extremely painful and ruins lives. Although endometriosis is so hard to live with, it’s shaped me into a much stronger person and for that I am grateful. 

I am going to walk THE YORKSHIRE 3 PEAKS very soon, hopefully my friends and others will join me, to raise awareness for Endometriosis Uk. This is a huge challenge for me as i used to be reasonable fit and my passion is running with the Farsley flyers running club and friends. My fitness has deteriorated a lot since the last year, making this a very big challenge I will face but always want to achieve.

Your support and understanding means the world...Having the laparoscopic surgery to investigate the endometriosis and possibly help me get rid of some of the pain, rebuilding my business and enjoying life again.

Thank you in advance for reading about my journey to this point in my life and if anything I hope it educates and improves your understanding of this horrible condition.

Sarah xxx

[Lindle]

On the basis that this seems to be intended as an info post, just for the info of others be aware that a lap isn't the gold standards for diagnosis and is now considered outdated dogma. Also anyone with stage 4 endo who seeks private treatment should only be treated in a private endo centre by a multidisciplinary team and excision for severe endo would usually start at around 10K.

[IB15 in reply to Lindle]

Hi Lindle,

Apologies if this is a silly question! What in that case is the gold standard for endometriosis diagnosis? Is it to be done through MRI first now?

Sarah, it sounds like you have been through so much I sincerely hope you get the help and relief you need. You sound like an incredibly strong person to have achieved so much and run a business, it must be hard to step back for a bit but know you health really does come before everything. Wishing you all the best with your next surgery x

[Lindle in reply to IB15]

Yes a scan should be done first - so expert MRI or ultrasound. A problem we have is that basic ultrasounds in general gynaecology don't usually look beyond the ovaries and will only pick up endometriomas. Endometriomas are associated with severe rectovaginal endo so ideally we would want the sonographer to then go on to check the 'sliding sign' which looks to see if the bowel and uterus are stuck which is the cardinal ultrasound finding for rectovaginal endo. BMUS are looking into having this included in basic sonography training for endo. This would then qualify for referral straight to a specialist endo centre and thereby avoid a diagnostic lap. The centre would then do any additional imaging required to map the pelvis prior to complex excision.

A lap will often miss endo for various reasons - for example, the surgeon not being suitably qualified to see endo in all its forms or the fact that a lap can't see retroperitoneal endo (so behind the peritoneal lining) which can be seen on expert scans. A combined approach is required. But more emphasis is now placed on imaging as progress has been made in this area to identify severe cases without a diagnostic lap. If imaging is negative then the choice is still a diagnostic lap or medical treatment.

[IB15 in reply to Lindle]

Thank you so much for you response. This is so interesting to me. I hounded GP's for an MRI scan for years as I believed I had a nodule after extensive research, but was refused time and time again. I used to say it would save the NHS money if they could do an MRI first then one surgery to remove it in one as they would know the extent of it, but was continuously told that wasn't procedure. It is SO good to hear that will be an option as a new route to diagnosis!! I also had multiple Ultrasound scans all of which came back clear just as you said due to sonographers not knowing what to search for in terms of rectovaginal endo. I hope this new way of diagnosing saves at least some women from having to go through diagnostic laps before removal can begin.

Is stage 4 endometriosis still allowed to be treated in BSGE centres with specialist surgeons through the NHS? Or should all stage 4 patients be referred elsewhere?

Apologies for all the questions!

[Lindle in reply to IB15]

BSGE accredited centres are mostly NHS - stage 4 must be treated in a centre. They are in tertiary care and centrally funded by NHS England (if you are in England).

In all fairness the change to a lap no longer being the gold standard for diagnosis was only formalised in Feb this year with the publication of the new ESHRE guideline but experts have always been aware of its limitations. In the old days this was really all we had but imaging has moved on. Link to ESHRE guideline (full version):

eshre.eu/Guidelines-and-Leg...

You might find this post useful that I previously put on:

healthunlocked.com/endometr....

[Ess1982 in reply to Lindle]

Hi Lindle I’m interested in your reply.. state 4 and considering the private route. What if the private centre is BGSE accredited?

[Lindle in reply to Ess1982]

Yes ideally you should be looking for a private BSGE accredited centre. But that isn't always the case as long as they work to the required standards. For example, there is a well-known robotic centre in London that isn't on the BSGE list but it works within a multidisciplinary team to BIARGS standards (British and Irish Association of Robotic Gynaecological Surgeons). What is important is that severe endo isn't treated by one surgeon privately even if they work in a NHS centre. The same standards must apply as would have done in a NHS centre for safety reasons and for sharing of complex surgical decisions by a team. You might like to join a FB group called Endorevisited for more treatment guidance. x

[Starry1977 in reply to Lindle]

thankyou fir this l I’m stage 4 and been using my bupa to be treated. My surgeon works for the endo centre in Wakefield but I’ve been using a spire. I’m actually going to see how I go as even tho I’m stage 4 I’m not n a lot of pain, and the treatment options of menopause or full hysterectomy with ovaries seemed very drastic. But if I decide to go down that route I’ll makes sure I’m treated in an appropriate centre even if he has to refer me back through the nhs.